Whole new world

Published 7:00 pm, Monday, May 21, 2001

Bear Branch Elementary student Kardi Hicks runs and plays with friends after receiving a special suit which enables him to play freely in the direct sunlight for the first time. The suit was created by NASA and present to Kardi earlier this month. Rare skin conditions have kept Kardi out of the sun.

By Allen Jones

A Magnolia boy is now able to join his playmates in the sunlight thanks to a NASA designed suit that protects his skin from the harmful rays of the sun.

Eight-year-old Kardi Hicks has spent most of his life indoors due to the cancers that have ravaged his body since infancy. He has two types of cancer: medullablastoma and neviod basal cell carcinoma syndrome.

The first cancer sent the child into surgery at only 14 months of age to remove tumors from his brain. Its the second cancer, the syndrome, that has kept Kardi inside and away from bright lights that produce ultraviolet A and B rays.

Every time sun light touches his skin, small mole-like spots appear, eventually sending the young boy back into surgery for their removal. So far, he has had nearly two dozen of the spots surgically removed. He may have 5 to 15 additional cancer spots to go.

Over the years, as the cancer spots kept forming, Kardi's mother kept looking for a solution. Kardi's mom Samantha Hicks, a nurse's aid, has spent years researching her son's aliments. Until the suit, Samantha and Kardi's mornings were spent applying sun screen and donning layers of clothing in hopes of blocking the sun's harmful rays.

However, Samantha says the use of sunscreen, long sleeve shirts, blue jeans, and hats are not completely affective in blocking the sun's rays. Most clothing, she said, only blocks about 75 percent of the ultraviolet light.

As for the lotion, it has to be re-applied and it too was not totally affective in blocking all of the sun's rays. Besides that, it was a daunting day to day routine that was beginning to take a tole on Kardi emotionally.

"Some mornings I could get Kardi up and ready for school with no problems," Samantha explained. "Other times it was a little harder because Kardi wouldn't want to go through the routine."

On those days, Kardi's cheeks would become streaked with tears as he silently continued to let his mother rub sunscreen onto his delicate skin. On those mornings, his mother wouldn't even have to ask what was wrong with her son. She would just hold him.

"Kardi tends to keep things to himself," Samantha said. "He won't let it out till later and then he blows up. I also think that he was having problems at school. The children didn't understand what was going on."

Kardi attends Bear Branch Elementary School. And as recess time would come along, Kardi would have to sit inside as his classmates went out to play. And of course, as children often do, some teasing came along with their ignorance of the boy's diseases.

"The school's administration has been very understanding," Samantha said. "The kids didn't understand what was going on. And Kardi didn't know how to handle it emotionally."

Samantha also says the school officials have been "really good" at allowing her to catch Kardi up on school work missed during absences due to his cancer and surgeries. She also says that in one of Kardi's classes, held in a trailer separate from the school, administrators had solar screens installed on the windows so that Kardi could participate in art.

But now that Kardi has the protective suit, he has become somewhat of a celebrity at school and in the Tomball and Magnolia area. As his mother kept researching the skin disorder and ways to protect her son's skin, Samantha discovered the Hypohidrotic Ectodermal Dysplasia (HED) Foundation based out of Hampton, Virginia.

The Foundation helped Samantha obtain funding for the protective suit that blocks more than 99.9 percent of the sun's rays. The suite was developed from space-based technology by NASA and has been used in the past to help children who suffer from HED. Victims of HED lack sweat glands, which can lead to heat stroke, heat exhaustion, and even death. It's a disease that Kardi doesn't suffer with.

The suits consist of a white jacket, pants, gloves and headgear, including goggles. The external garments, say NASA representatives, protect the skin from ultraviolet rays. Underneath the garments, children wear a small cooling support system, necessary because full-body ultraviolet suits can get warm.

The cooling system has no moving parts and uses four gel packs in a vest-like garment. The gel pack can supply cooling for two to four hours and can be recharged in a refrigerator in about 30 minutes.

After learning about the NASA suit, Samantha said she figured that if the suits not only keep persons suffering with HED from overheating, but also almost completely block the harmful rays of the sun, than the suit could help protect Kardi from the damaging ultraviolet rays. She then contacted the HED Foundation and sought help in obtaining a suit for Kardi.

The Foundation began in 1986 when HED Foundation founder and president, Sarah Moody, sought help from NASA's Langley Research Center in finding a cooling garment for her nephew, who suffered from disease. The Foundation now also provides cooling garments to children with Multiple Sclerosis, Spina Bifida, Cerebral Palsy and other disorders.

Through an agreement with the Johnson Space Center's Office of Technology Transfer and Commercialization, NASA and the HED Foundation have worked together since 1997 providing suits to children who need them. The suits are designed to cost under $2,000 and are now available in various colors.

The first three suits distributed were prototypes provided by NASA. The Foundation has provide more than 15 additional ultraviolet protection suits.

Kardi received his suit last late last month. Since then, Kardi says he feels as if he is working not only for NASA but also for the HED Foundation. And the little boy has been getting his fill of his self-proclaimed duties.

Just this month, Kardi has been on the nationally syndicated television shows, "Good Morning America" and "Inside Edition." He has also been featured on the "Debra Duncan Show," a Houston based talk show. Articles about the "NASA Boy" have also been featured in The Courier and the Houston Chronicle.

"We were taped by Good Morning America's camera crew early one morning. That same evening, we were on Inside Edition. By the time that show's camera crews were here, Kardi had become very nervous and was having some stomach problems. I told the crew that we may have to reschedule. But Kardi pulled my arm and said, 'No mom, I've got to do this for the kids who need suits.' But when he was finished, he had enough and went outside to play," Samantha said.

Kardi's mother says her son really believes that he can make a difference in the lives of other sick children who could benefit from the NASA suit. She said it is also there mission to spread the word about Kardi's condition so that others will be on the look out for suspicious moles on their skin.

"At first I was told that Kardi's problems were due to food allergies," Samantha said. "There is just not enough research out there right now. It is not the doctors' fault. Kardi has been through so much. I could have lost him a number of times. He is still here for a reason. We feel it is our duty to share what we are going through with others."